SLP Mommy of Apraxia

Category: cerebral palsy

  • Will you push me, Mama?

    Will you push me, Mama?

    “Will you push me, Mama?”

    Lying on the couch after work, mindlessly scrolling social media when my sweet nine year old daughter says, “Will you push me on the swing, Mama?”

    I’m a pediatric speech/language pathologist and my job is AMAZING, but it’s also very demanding and zaps me mentally and physically by the end of the day. An introvert at heart, I need alone time to recharge and refuel. Needless to say, pushing her on the swing was not on my agenda for the night. However, as I looked into her bright eyes sparkling with hope, I put my phone down and asked her to give me five minutes. Enthusiastically she ran to the clock, figured out how long five minutes would be, and then bounded out the door.

    “Will you push me, Mama?”

    There was a time my daughter with apraxia couldn’t say “Mama” and had to go to speech therapy to learn it. Once she had words, she had to learn how to put them together to make a phrase because she also has a developmental language disorder. There was a time she had to go to speech therapy to learn how to add the /s/ to /s/ blend words, words in which an /s/ is next to another consonant as in “swing.” There was a time she had to learn how to use verb tenses correctly and once she understood and used verb tenses correctly, there was a time she had to then practice “interrogative reversals” in order to ask questions correctly. Those days seemed so long. The struggle seemed so long. Yet here she stood, effortlessly doing all those things as though she never spent hours in therapy offices learning how to do them. Here she stood asking to be pushed on the swing, something most kids were doing while she was working hard to find her voice.

    “Will you push me, Mama?”

    Though my daughter can pump her legs herself now and swing, there was a time she had to spend hours in occupational therapy and physical therapy before her core strength could even support the act of sitting up on and pumping a swing. Then, once she was strong enough, she needed more therapy to get the coordination of the movements down. As she got taller, she then needed to learn how to change the motor plan and move her ankles out to the side so her feet wouldn’t hit the ground. Yet, here she stood, able to do all of these things now but still asking me to push her. She’s nine years old. We are getting close to her never asking me this question again and the gravity of that sunk in. Would this be the last time she asked me to push her? My mind flashed back to her beautiful smile when she is swinging. She literally came out of the womb and hogged the swing in the nursery. The nurses all laughed and mused at the baby who was only happy in the swing. It never stopped there. I have numerous pictures, too many to count, of her swinging in various ages of her life.

    “Will you push me, Mama?”

    I thought about how swings go up and down and up and down and how Ashlynn smiles and giggles through it all. I thought about how swings are a lot like life in that way. Ashlynn has a lot of challenges. She has a genetic mutation called BCL11A that has caused numerous disabilities and her life is anything but easy street. If anything, it’s more like the swing in that there are ups and downs, successes and challenges. Through it all though, she smiles.

    “Will you push me, Mama?”

    I thought about all the areas I’ve had to push her. Sometimes I wonder if I pushed too hard. Did I let her be a kid enough? Will she only remember speech therapy, occupational therapy, physical therapy, and tutoring? Nights struggling through homework? Nights struggling through activities of daily living that are so hard for her, such as brushing her teeth or getting dressed, because I know she needs to learn to do them for herself?

    “Will you push me, Mama?”

    So on this cool summer evening in June, tired from work and craving alone time, I got up and pushed her for an hour that night in the backyard. We laughed and giggled and made up games. I reveled in the fact my daughter still wanted me to push her, and I prayed to find a balance in the future of pushing her not a breaking point, but further and further to her potential. Oh, and making sure we find time to keep smiling and laughing along the way.

    Laura Smith is a mother to two beautiful children, one of which was diagnosed with a rare genetic mutation that caused a multitude of learning challenges.  She is a Denver based Speech/Language Pathologist now specializing in Childhood Apraxia of Speech. To learn more visit SLPMommyofApraxia.com

  • How do you say I love you?

    How do you say I love you?

    There was a time I prayed for Ashlynn to tell me she loved me.

    Having apraxia and a language disorder made that tough.  Even when she could repeat “I love you” when given a model, that didn’t mean she could volitionally pull it out and say it spontaneously.  That took more years and work in therapy.

    Ashlynn, even before the birth of her brother, has always been attached to my hip.  An apraxia mom friend of mine lovingly calls them barnacle babies. I knew Ashlynn loved me before she could ever say it. Her actions have always spoken louder than her words.

    Ashlynn is now nine.  She has been able to say ‘I love you” without any prompts and on her own accord for at least 5-6 years now.  We had two back to back snow days in Denver thanks to a “bomb cyclone” blizzard that left Denver experiencing the lowest barometric pressure ever in its history.  That’s pretty incredible, but through it all, Ashlynn was attached to my side.  We don’t get a lot of down time.  We are always on the go from school to therapies to tutoring and then carving out family time, 1:1 time sitting at home and relaxing seems like an anomaly in our lives.  It seems like it, because it is.

    Wednesdays she usually goes to school.  Then I pick her up and we meet her dad at a place to drop off Jace and then I take her to PT and then swallowing therapy.  We get home around 6:30 where we gulp down dinner and then have to do her school homework and possibly the other hw from all of her therapies.

    Being a kid and relaxing doesn’t happen on this day.

    Thursdays she of course goes to school.  I’m working so her dad picks her up, lets her see her grandparents for an hour who live by school and then she comes to speech therapy at my office where my colleague/mentor treats her.  Afterward, we stop and get her a super nutritious meal from McDonald’s that she eats in the car before going to Girl Scouts, which has been nothing short of amazing for integrating her with her neurotypical peers and providing a “normal kid” activity among all of her therapies.  We then get home 10 minutes before 8 where we scramble to get her school homework done and I feel guilty for not getting to her OT, PT, and swallowing hw as she gets ready for bed.

    Not this week though.

    ALL of that was cancelled thanks to the two consecutive snow days. We actually just hung out.  She sat by my hip and we talked, played with the dogs, watched the news that droned on about the blizzard and took silly selfies on my phone. It was amazing. Was this what life was like for “normal” people?  Are there any normal people?  What IS life like for kids who don’t have a therapy every day after school?  I’d ask my son, but he’s always caught in the cross hairs and even though he doesn’t personally have therapy, he has spent more than his fair share in waiting rooms.

    She must have told me “I love you” at least a dozen times or more.  I wasn’t doing anything special.  I was just here..and she was here…and we all were here snowed in.  I have to admit I didn’t even think about the days when I longed to hear “I love you” without having to prompt her.  I can’t believe that those three words started to lose their luster.

    Tonight was Thursday night.  In what was supposed to be a packed night of Jace’s Cub Scout Pack meeting and Ashlynn’s routine girl scout meeting, I also had an SLP meeting where I met with other area SLP’s.  My husband was to take the kids to both scout meetings that were now cancelled due to the weather.

    As I left, Ashlynn said goodbye as though nothing was wrong and then immediately her face fell and she started crying.

    “Ashlynn!  What’s wrong?  I’ll be back okay?”

    Ashlynn fought back tears and said she would miss me.

    “I’ll miss you too but I promise I will be back ok?” I said as my heart was breaking. She frequently gets like this when I leave.  I thought about the day and how she had told me she loved me at least a dozen times.  When you tell someone you love them that much it starts to lose its effect.  I think I (shamefully) started to take it for granted.  I gave her my work cell phone as a compromise.

    “If you miss me, text me and me only ok?”

    Her tears turned to a smile and she squeaked out an “ok.”

    “Do NOT text anyone else from this phone.  I will be busy but I promise I will text you back.”

    As I pulled out of the driveway I saw her face in the window.  She waved vigorously and then frantically blew me kisses.  I blew them back.  I wasn’t even off our street when she texted me her signature, “Ashlynn.”

    I usually make her text her name first because she uses my phone to text a small but approved list of family members who need to know it is her texting them.  I stopped at a stoplight and told her I would text her when I got to my meeting.

    In those two hours she texted me that she loved me three times.

    I wouldn’t think anything of it, except she frequently texts five other family members and though I know she loves them, that is not something she says to them.  She likes to send emojis, ask them what they are doing, or tell them about her day.  Due to her severe language disorder, I have many times talked about how Ashlynn talks in scripts.

    This “I love you” script though.  This particular “text” script was saved just for me.

    I almost cried reading it tonight at my meeting in between her emojis, selfie pics, and other comments.  I was sure this “script” was purposeful and meant just for me.  After one when I wrote back “I love you Ashlynn” I received an immediate response that said “I love you mom so much.”

    Ashlynn is nine.  NINE. Half her child life with me is gone.  My God.  Where did it go?  I still remember everything vividly.  Ashlynn was 2 years and 11 months when she was diagnosed and life took an accelerated pace after that.  We have been on the hamster wheel for six years now.  I can still look at the little table where I poured out those foam stickers while nursing my son and she said her first spontaneous “I love you.” I can close my eyes and remember like it was just yesterday.  I remember dancing in our living room to “Call me Maybe” and her laughing and throwing her head back like I was the most hilarious person on the planet.  And I remember wishing, hoping, and praying before I knew she had global motor planning problems that she would just try and imitate my dance moves much less my voice.

    As I sit here with tears in my eyes, I recognize  Ashlynn was and always has been so limited in what she could tell me.

    However I do believe now it was ALL going in.  I’ve always felt like my greatest job and purpose in life was to not only raise her and Jace, but to make them feel like the most incredible humans that they are.  With Jace it’s easier.  He talks to me.  I can get him to tell me his feelings.  That has never been the case with Ashlynn.  She struggles to express her basic thoughts much less complex feelings.  However, she has always found profound ways to express them with her limited language such as tonight when I was the recipient of multiple “I love you” texts.

    During the snow day we took selfies and she frowned at the pictures where I’m smiling but you can’t see my teeth.  “Why are you smiling like that? she demanded.  I thought to myself I liked how less of my wrinkles showed but instead just said, “I don’t know.’   She frowned disapprovingly.

    “Don’t smile like that, ” she said.

    I asked her why.  I wanted to know what was wrong with that smile.

    “It’s not YOUR smile mommy.  Smile real ok?”

     

     

  • Did I cause her apraxia?

    Did I cause her apraxia?

     

    When Ashlynn was first diagnosed with Childhood Apraxia of Speech, I think most parents will relate when I say I spent (pointless) hours wondering what had caused it.

    Back in 2012 when Ashlynn was diagnosed, the most current information we had at the time was that it could have three main causes:

    1. Brain Trauma such as a stroke in utero
    2. Genetic causes
    3. Idiopathic – meaning of no known cause

    Though I knew this, I couldn’t help but cycle back to questions.  Questions that kept me up at night.  Any parent of a child with special needs has probably done this endlessly.  It is probably one of the main causes of sleep deprivation in special needs parents right behind “am I doing enough? and goes something like this.

    Was it that time when I was 6 months pregnant and I had the stomach flu?  Did I wear the painting mask long enough when I painted her baby room?  Was it because I had to have a C-Section?  What about the vaccines, giving her Tylenol, or that time she bumped her head?  Maybe it was……..

    And before I know it, I’m deep into the weeds unable to find my way out.

    It doesn’t help I had been privy to professional “inside” comments with colleagues who blamed parents for lack of reading, lack of talking, lack of stimulation etc.  You can read about my snub to those “opinions” in my article where I snub the 30 million word gap theory.

    It also didn’t help I would hear stories from other apraxia mamas who would share their personal experiences of being blamed and shamed.  

    So, I sought answers. It was a revolving door of specialists, waiting lists, and additional diagnoses, but still no answers as to the cause.  I would cycle through periods of acceptance and guilt, such as in this post I wrote when she was a little over 4 about a year after her CAS dx.

    Earlier this year, I thought we had found our answers when we went to rehabilitation specialist at Children’s Hospital who diagnosed her with dystonic cerebral palsy. Though I had more answers to her disability profile, I still didn’t have any answers as to what caused all the issues.

    No answers that is, until we found ourselves in the office of a genetic doctor and genetic counselor.  This is not to be confused with general genetic testing that a pediatrician can order either.  It was there that we would learn the cause of everything.  It was there, I would finally know why Ashlynn had apraxia, dyspraxia, hyptonia, ADHD, dysarthria, SPD, CP, and learning disabilities.  The answer was housed in a small set of letter and number combinations called:

    BCL11A

    A quick pub med article revealed that of the few case studies we have, children shared commonalities with:

    1. Non-verbal or low verbal status
    2. Abnormal muscle tone
    3. Gross motor delays
    4. Childhood Apraxia of Speech
    5. Dysarthria
    6. Hypotonia
    7. Dyslexia susceptibility

    The doctor explained the genetic mutation was “de novo” meaning it was not inherited and happened at conception.  It was a complete fluke when the sperm and egg came together that this mutation happened on the 2nd chromosome.

    Is it possible to be completely stunned and then not surprised at all at the same time?  Is there a word for that?  If there is, that is how I felt.  I knew as a professional researching this endlessly it wasn’t my fault.  Mom guilt though.  Mom guilt is a real thing.  It is strong, irrational, and overwhelming. So, in that sense, I wasn’t surprised.

    Knowing though that a genetic mutation was the single cause for all of her disabilities was shocking, but then quickly reaffirming. So many things went through my mind with the biggest one being,

    “This really wasn’t my fault, and furthermore, there is nothing more I could have done to change this.”

    The genetic landscape regarding apraxia is a new and quickly changing field.  We are going to see more research and information coming out now recommending that genetic testing be pursued.  Look for a follow up post with me talking about this new and changing frontier.

    For now though, I need time to process and learn.  A mother does better research than the FBI after all, when searching for answers about their child.

     

    Laura is a speech/language pathologist specializing in Childhood Apraxia of Speech and mom to two amazing children, one neurotypical and one neurodiverse. Laura is a speaker, writer, Denver Walk Coordinator for Apraxia, and is the voice behind the website SLPMommyofApraxia where she is passionate about Apraxia Awareness. 

     

     

  • When inclusion works: my hope for the rest of 3rd grade

    When inclusion works: my hope for the rest of 3rd grade

    This past break, I went over my posts from 2018, and read the article I wrote at the beginning of the year.  In it, I begged parents to teach their children to be kind as I wrote about the importance of inclusion.

    You can read about here.

    I was filled with worry and trepidation as Ashlynn started third grade.

    Last year in second had been one of her worst years with peers and friendships.  She frequently came home with bloodied shirts from her picking her fingernails.  Many times, the nurse had to change her shirt it was so bad.  She always reported that she hadn’t played with anyone at recess and my heart broke for her nearly everyday.  In second grade, she was also bullied in the bathroom but thankfully some other students heard and told the teacher.  Fresh off the heels of a great summer, I worried to see her go back to school again.

    This year though in third grade, has been one of her best years for growth not only academically, but also with friends and feeling like she was part of the class.

    The teacher told me at parent/teacher conference in November that she had told her class if they see Ashlynn sitting alone to go grab her and include her because many times it’s not that she doesn’t want to play; but rather that she has a hard time jumping into a situation.  The teacher went on to explain the kids initially did it because they were instructed to, but as they got to know her they now do it because they wanted to.

    Every year before winter break, 3rd grade throws a Luau party to add some fun and a twist to a normal Winter celebration.  I volunteered to run a craft with the class. I couldn’t believe what I saw when I got there.  Ashlynn was completely assimilated into the classroom as one of the kids, and not the “special ed kid” or the “ILC kid.”

    As she talked to her friends I thought of her speech therapy.   As she navigated the limbo stick like any of the other classmates I thought of her work in occupational and physical therapy. Her special education teacher wrapped up her current progress monitoring showing how she had rocked her goals because she knew it would be the best Christmas present to see all of her success and she was right.

    As she completed some seat work independently I thought of her TA who understands the difference between enabling and helping.

    This is how inclusion is supposed to look. Every human whether they have differences or not all want the same thing. They want to feel useful, included, and loved. Her smile says it all.

    Honestly I didn’t need any Christmas presents this year.  My cup was overflowing.  I just pray as Winter Break is over and she heads back to school, that the second semester will be as amazing as the first.

    Laura Smith is a mother to two beautiful children, one of which was diagnosed with a constellation of issues including apraxia that can be traced back to a genetic mutation entitled BCL11A. She is a Denver based Speech/Language Pathologist now specializing in Childhood Apraxia of Speech.
  • Top Ten SLP Mommy of Apraxia Posts for 2018

    Top Ten SLP Mommy of Apraxia Posts for 2018

    Hi readers!  I haven’t been as active on the blog as usual because my goal for 2018 was to write a book and I’m happy to say I completed that goal!  My goal of 2019 is for it to be published, so we will see!  In the meantime, I did manage to get some blogging done and here are my top 10 posts for 2018!  Thank you so much for your support and your love throughout the years.  It truly means so much.

    1. The Problem With School SLP’s

    A

    2. Interview with Mikey: The Wish That Turned Into a Passion

    3. Apraxia as a Symptom to a Bigger Picture

    4. Strategies to Promote Speech and Language in the Pre-Verbal or Minimally Verbal Child with Apraxia

    5. This School Year, Teach your Children to be Kind

    6. Finding our Umbrella

    7. Good SLP’s are Addressing the Head in the Hands

    8. The 6th Apraxia Awareness Day Brought Smiles, Tears, and a Jaw Dropping Moment

    9. Report Cards are Bitter Sweet in Special Needs Parenting

    10. Old Faces, New Faces, and the Passing of the Torch

    Cheers to an eventful 2018.  It was a year full of pain and happiness, love and sorrow, and hope and despair.  May we all remember that life can be intensely beautiful and irreparably sad all at once, because that my friends, is the definition of living.

    This 2019, I wish you all the gift of perspective in life.  We all have bad things happen.  We all have stress and we all have pain.  We also all have a choice, and that choice is to wake up each morning with a grateful heart and to focus on our happy and joyful moments rather than be sucked into the pain of despair and heartache.  There was a time Ashlynn’s dx seemed like the darkest event in my life, but I realized it was the beginning of my testimony to some of the most beautiful characteristics this human life affords us.  May God bless us all this year and always.
    Love and Peace,

    Laura

  • Disabilities, extraordinary abilities, and lessons in neurodiversity

    Disabilities, extraordinary abilities, and lessons in neurodiversity

    Neurodiversity and learning disability were never in my vocabulary before I had my daughter.

    I had never been exposed to learning disabilities of any kind really, and I had no idea the extraordinary gifts those who are neurodiverse had to offer this world.

    No, when I was in second grade, I was in my egocentric world and our teacher had us write “a book.”  It was a short story and we were to write on the typical school paper that has a box at the top to draw an illustration and then lines at the bottom to write the story.  Writing was always my thing.  Art….was……not.  I usually skipped the picture and went straight to writing.  In my defense though, I never technically had an art teacher.  However, even if I had, I’m sure I would have still been that defiant snotty little girl who turned up her nose at art.

    During one edit, the teacher told me the book was great but I needed illustrations.  I argued with her.  Her job wasn’t to teach me how to draw, her job was to teach me how to write.  Drawing was for the kids who didn’t know how to write and I knew how, so what did it matter anymore?  Did I mention I also went to a Catholic school, so I was marked down automatically for being sassy?  I never pulled that again, but it didn’t stop me from internally rebelling against drawing.

    “When will I EVER need to know how to draw as an adult?” I indignantly exclaimed to my mom.

    My Catholic school teacher had the last laugh though when I became a speech/language pathologist and discovered I needed to know something I didn’t know how to do.  You guessed it.  Draw.

    “What is that?  Is that a dinosaur?” one kid would ask of my drawing of a horse.

    “That’s supposed to be a bird?” another asked of my drawing of an airplane.

    Yes friends.  That sassy, know it all second grade girl started wishing she had paid more attention to art.

    Fast forward 30 years and I have a little past second grade daughter myself.  She has a laundry list of learning disabilities, many stemming from an etiology in motor planning and cerebral palsy.  Everything for Ashlynn seems hard.  She has had to fight and claw her way to learn anything through hours and hours of therapy.  I’m not kidding.  In Elementary school, she started coming home with art pieces from art class that were nothing short of amazing.  They were so amazing, it was sadly hard for me to believe that she did them without help.  However, her art teacher maintained she taught all the kids in a very structured way, giving them multiple opportunities for practice (think motor planning) before completing the final piece. This was Ashlynn’s best one from last year.

    Despite this, Ashlynn had never demonstrated to me independently she could draw even remotely close to this on her own.

    That was, until tonight.

    “Mommy, do you know how to draw a fox?” Ashlynn asked me tonight at dinner.

    “Oh baby, I don’t really know how to draw much of anything,” I answered while my husband snorted his drink out his nose in laughter before adding,

    “That much is true!  Mommy is not an artist.”

    I shot him an evil glare but unfortunately there was no denying the truth.

    “Can I teach you how mommy?  I learned how to draw a fox in art?” Ashlynn offered.

    I agreed and after dinner she had gathered paper and coloring utencils and set to work.  I really wasn’t sure what to expect.

    “Put your fist in the middle of the paper like this, and now draw a line across the top,” she instructed.

    I complied.

    “Now connect this line to this line and see?  We made an upside-down pizza,” Ashlynn continued.

    I looked at the perfect triangle and my mind raced back to three days earlier at OT where the therapist told me Ashlynn’s hardest shape to draw is a triangle because of the diagnal lines. I stared incredulously again at Ashlynn’s perfect triangle.

    “Mom!  Are you paying attention?”

    She then took me in precise detail through the rest of the picture.

    I was impressed by this.

    “You are such a great teacher Ashlynn,” I said.

    “I know mommy because I want to be a teacher you know that.  A teacher and a dog walker because that’s my deal.”

    I smiled.  She just produced a compound complex sentence.  This girl with apraxia and a language disorder just said that.

    Next was the colors.

    I fought back tears.  This was incredible.  I watched her color the page with her wrist fluidly and precisely moving back and forth and my mind flashed back to when her OT told me that until she is able to isolate her wrist from her arm, she would always have trouble coloring within the lines.  I marveled at her wrist now.  Isn’t that crazy?  What mom would marvel at their child’s wrist and control unless they had witnessed how hard that skill was to master.

    Next was texturing and drawing the trees.

    She used these terms I had never heard like “we have to jump and bump.”  I followed along dutifully.  At the end of her lesson I praised her.  It was incredible.

    “But Mommy, we aren’t done!” she said as she got out two new blank pieces of paper.

    She told me we had to write about them.

    Write?  Like actually write?  This girl with motor planning, dyslexia, and dysgraphia now wanted to write about the fox?  She began writing but immediately messed up her spelling. As she peered over at my page that she had dictated, she decided to just copy my sentence. I watched her form the letters as she had been taught and practiced throughout her years of OT and copy my sentence. There was a time, she couldn’t even copy her name, I thought to myself.

    “Sorry, mommy, ” she said, “I can’t write really good yet.”

    I responded, “That’s okay, because I can’t draw very well.”

    “But I can teach you!” she said happily.

    With tears in my eyes I told her,

    “If you teach me how to draw, I’ll teach you how to write.”

    “DEAL!” was her enthusiastic response.

    So that’s the deal.

    Thirty years later my art teacher was a 9 year old girl with cerebral palsy, severe motor planning deficits and a laundry list of learning disabilities whose greatest wish in the world is to be a teacher.  Little does she know, she already is.